I have decided to dedicate this blog mainly to discussions about my condition: Neurocardiogenic Syncope or NCS for short. I have been on the.worst.episode.of.my.life and the misconceptions and suppositions I'm having to deal with are staggering and not helpful and in some circumstances, are harmful. I would like to give voice to others who suffer from NCS because not only is the condition so misunderstood, but so are the people who spend most of their time looking and feeling good and healthy and normal. I just want you to know that you are not alone.
About a week or so ago, I found a group on facebook called Neurocardiogenic Syncope Awareness. It has become a cyber-Nirvana for me because these people get me, because these people ARE me. Cue the harp music and angels because this has been a heavenly experience. One of the women in this group stated that when she had her second tilt table test, she didn't faint and she didn't feel faint until they were lowering her back down to a horizontal position. I literally got a tear in my eye because I just had my second tilt table test on July 30, 2013 and that was my experience, my exact experience.
When my second tilt table was negative, I felt betrayed. I spent seventeen years prior to diagnosis being told there was nothing wrong with me. My EKGs always come back negative. Up until this last Holter monitor, nothing abnormal showed up there either. What I heard for seventeen years of my life was, "There's nothing wrong." So I would work until I dropped, literally. I have a friend who can tell you he called me from his desk at the office to talk to me about a customer and I told him I wasn't feeling well and then I just went out. They found me slumped over my desk with the phone still in my hand. Until I dropped. So having that second tilt table come back negative, I immediately retreated into the standby of "nothing wrong" and went back to work on August 2, 2013 even though I was having my typical morning fatigue (despite a good night's sleep) and vague icky feeling that precede an episode. I worked for 3.5 hours and then I had to leave. I came home and laid on my couch with my feet elevated. And I have still been countering some doubt until I went to check in with the group on facebook today. When I read that someone else had that happen to them, I had to post a response.
I had to post to this stranger on facebook because I knew her need to not feel like "there's nothing wrong". I knew how important it is to have validation that someone else has your same symptoms, your same triggers, your same frustrations. It was a relief for me to know I wasn't alone in this experience and I wanted to provide her with this same relief because I know.
I saw a video posted on there to which I am posting a link. http://abclocal.go.com/ktrk/video?id=9098112 and I have asked people to watch it. This is on an ABC news station and it states it is due to NCS that this young man had an accident. And there were tragic results. The man with NCS survived, but three others didn't. And this poor guy's heart stops. He flatlines. Thankfully, I don't, but now I'm having to wonder if I'm approaching the possibility of having to give up my car or my license because that would mean I'd have to give up some independence, some autonomy. Ironically, NCS is considered Dysautonomia, kinda like your autonomy is gonna get dysfunctional. (That's not what it means, but that is what it feels like.) I felt like saying, "Well, at least I'm not as bad as this guy." And truly, I thank God that my heart doesn't stop for a few seconds, but my heart is dysfunctional. And it's OK to admit to being frightened that right now, I can't make a sandwich for lunch because I don't have bread and don't have the ability to go two blocks to get some. And that it's OK to be in tune with my body to know that when I feel like this, I'm more likely to faint so it's OK to recline on my couch with my feet up and not do anything I don't have to do. It's even OK that it's taken me over an hour to write these few paragraphs out. It's OK that I'm not doing anything productive right now. I've given myself permission. Give yourself permission, too.
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